5 Pieces of Advice on Having 'The Conversation' About End-of-Life Care

Ellen Goodman believes that people should be able to choose how they spend the end of their life, in the same way that they choose how they live: by their own value system.

To help start that dialogue, she co-founded a non-profit called The Conversation Project. “Whether we spend our final time in the way we would choose may depend not just on our own wishes, but whether they are shared,” says Goodman, who is director of the organization.

The idea for The Conversation Project came from Goodman’s own experience with her mother, who became ill in her 90s. Prior to that illness, she had talked about her wishes in the most elusive of terms, saying things like “If I’m ever like that, pull the plug.” When dementia set in, Goodman was left to make a number of challenging and stressful decisions on her mom’s behalf.

With The Conversation Project, Goodman hopes to save people from being in that daunting position of uncertainty. The organization created a series of free starter kits that guide conversations around what matters most at the end of life. One of the starter kits is aimed at family members of people with Alzheimer’s and dementia; another shares advice on how to talk to your doctor about your wishes; and another is a guide to choosing — and acting as — a healthcare proxy.

“I think people are beginning to normalize these conversations, or to recognize that it’s important to have them,” says Goodman. “But we still have a long way to go until everybody’s had them.” She shared this advice on how to carry out these talks with your loved ones.

Recognize that you’re not alone. This particular conversation is one that many others are also struggling with. According to a survey by The Conversation Project, 90 percent of Americans agree that it’s important to discuss their end-of-life care wishes yet; only 27 percent have actually done so. Goodman says that the message there is clear: “It says we’re afraid of the big D!” she says. By initiating the conversation with your own family, you can help bring about change.

Think about how you’ll bring it up. Every family will have a different approach. Some may talk about it over dinner; others may find comfort in discussing it in the car, staring straight ahead. Goodman says that when deciding how to initiate the conversation, personal anecdotes can be a smooth segue. “Say, ‘Remember when Aunt Suzy came to the end of her life, and remember the choices that you faced with grandma or grandpa?’” says Goodman. “To start with a family story is very useful.” She also suggests that adult children can initiate the conversation by asking their mom or dad for help. “Say, ‘There may come a time when I have to make decisions for you and I need to know what you want, so I’ll be left feeling good about this,’” she says. “It’s the rare parent who can say, ‘No, I won’t help you.’”

Be prepared to ask questions about values. Download a starter kit from The Conversation Project and it will guide you through the questions to ask in a number of scenarios. Goodman says it can also be helpful to answer those questions yourself, and then share your answers with your loved one and ask if they’ll do the same. The key, she says, is to get a general feel for what people want, rather than providing a checklist that tries to cover all possible scenarios. “What you can tell people is it matters to me that I’m at home, if possible. It matters to me that I’m not in pain. It matters to me that if I no longer recognize the people that I love, I get no more healthcare. And conversely, it matters to me that as long as I’m able to eat chocolate ice cream, I’m fine. As long as I seem to be out of pain and happy, that’s good,” she says. She suggests writing down the answers or recording them via audio or video so you can reference them if you need to.

Have the conversation when the person is healthy. It might feel like it’s “too early” to discuss a person’s wishes when they’re in good health, but Goodman says that is the best time, before any health challenges set in or any decisions are eminent. “Once it’s a medical crisis, it’s really hard to have a ruminating, thoughtful conversation about values,” she says.

Continue having the conversation. Goodman says that a discussion like this is not a one-time thing. Plans, expectations, conditions and situations change over time. She encourages people to return to the talk, as needed.

Talking about end-of-life care can be challenging to initiate, but in the end, it can benefit the entire family. “The fear that stops people is getting over that threshold. Because once you’re over that threshold, these conversations are not scary and not depressing,” says Goodman. “People will tell you after they’ve done it that it was the warmest and most intimate conversation they’ve had with their loved ones.”

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The health information contained herein is provided for educational purposes only and is not intended to replace discussions with a health care provider. All decisions regarding patient care should be made with a health care provider.